The colours of the chameleon are not more numerous and inconstant than the varieties of the hypochondriac and hysteric disease.
Robert Whytt, On Nervous, Hypochondriac, or Hysteric
Diseases (1764)
MOST DISEASES POLITELY restrict themselves to a finite number of symptoms. Heart disease largely appears as just what it is: chest pain or palpitations. People recognise the symptoms and seek the help of a cardiologist. Of course, occasionally it is sneaky and only causes fluid overload and ankle swelling with no chest-related symptoms at all. But for the most part many cardiological, respiratory, neurological and other organ diseases obey quite strict criteria of rules, with the greatest variation being not in the type of the symptoms, but in the severity.
There are diseases, however, whose pattern is so varied that they are easy to underestimate when you first encounter them. Autoimmune disorders, such as lupus, can manifest in myriad ways, maybe as a skin rash, or a joint pain, or just fatigue. Lupus affects multiple organs so it may produce a mixture of confusing signs that make it difficult to diagnose. As a result some patients may see a variety of specialists before their medical diagnosis is discovered.
But even compared to the most aggressive multi-system disease, psychosomatic disorders are noteworthy for how little respect they have for any single part of the body. No bodily function is spared or ignored. And how easily and quickly these disorders flit from one place to another, like little rodents evading capture. Just as one psychosomatic symptom is discovered it disappears and, watch out, there is another emerging somewhere else.
As we have seen, the ancient Greeks thought that the uterus wandered about the body causing symptoms. The wandering womb was called ‘an animal within an animal’. It was imagined that the womb might leave the pelvis and lodge itself in the throat causing an inability to swallow. The next day it might move to the stomach and cause pain and vomiting. And, however wrong this view might have been, there are elements of the description that are recognisable. But it is not an animal or an organ that wanders, it is sadness. And it is looking for a way out.
Alice’s story began with cancer.
At the age of twenty-four Alice had found a lump. She felt it just in the upper edge of her left breast next to her armpit. She first noticed it when she was in the shower before work and, as soon as her hand happened upon it, her heart immediately filled with terrible memories and feelings of dread. She did not go to work that day and instead made an appointment to see her doctor. Her doctor respected her fears and made an urgent referral to the breast-cancer clinic.
One week later Alice was sitting in the outpatient waiting room an hour early for her appointment. She was alone. She did not want to worry her family until she was sure that there was something to worry about. The consultant who saw her was kind and listened to Alice carefully. When the consultant examined Alice she said she could not feel any definite lump and it was possible that there was nothing there at all. Alice was both relieved and worried by what had been said. If there was no lump this was very good news. On the other hand Alice was sure she had felt something and didn’t want to be dismissed. She felt better when the consultant arranged for her to have a mammogram and an ultrasound. That way they could both be certain.
On the day of her tests Alice once again turned up an hour early. When Alice was called in for her tests, the middle-aged radiographer remarked, ‘Oh, you’re a bit younger than my usual customers.’ The radiographer chatted about weather and transport strikes as she placed Alice’s breast in the machine for screening. A radiologist joined them as the ultrasound was done and the room became quiet. When the tests were completed Alice was asked to wait outside. Had she imagined a change in the radiographer’s tone?
Twenty minutes later Alice was called into the consultant’s office.
‘We have found a lump, Alice, and I think we should act quickly to find out exactly what it is, so I would like to biopsy it here and now.’
‘It’s cancer isn’t it?’
‘Let’s not jump the gun.’
The result of Alice’s needle biopsy came back one week later and her certainty that she had breast cancer was confirmed. The consultant told her that she would need both an operation and chemotherapy but that first she would need a series of tests to assess the extent of the cancer.
After leaving the hospital Alice telephoned work and said she would not be in that day and it was possible she may need to take some time off in the future. She then went to a ticket office in London and bought a ticket to see the stage musical A Chorus Line.
‘I can’t quite explain why I did that,’ she would tell me later. ‘I got this idea in my head that I could die at any moment and that I would hate to die not having seen a proper musical on the stage. There were two middle-aged women in the seats in front of me and before the play started I could hear them talking about their holidays and their husbands and what they’d had for lunch. I had an urge to scream at them, to tell them to keep quiet but then the show started and for a couple of hours I pushed the diagnosis to the back of my mind. I keep thinking what an odd thing it was to do, to go see a musical at just that moment.’
Alice told her family and close friends about her diagnosis in a series of telephone calls over the course of a week. Her only sister, who lived in Australia, wanted to fly to England as soon as she heard the news. Alice said she would need her more in the future when she was recovering from her operation so she should not come until then. Alice’s father insisted that Alice move home immediately from her bedsit in central London, so that she would not be alone. She loved her independence but knew she would need help so she packed a bag and moved to her family home that evening, more for her family than for herself. Then she had only to wait.
Over the next week Alice went to work as usual, only telling her immediate manager what was wrong. She saw no value in sitting at home thinking about her diagnosis. Over the course of the week appointment letters arrived informing her of the dates and times of her tests. The next seven days were spent travelling to and from the hospital, her father always by her side.
Approximately two weeks after she had learned of the cancer, before she had received any treatment, Alice developed severe headaches. For a day or two she tried to ignore them, attributing them to stress. But soon the pain had become so bad that she could barely go to work. She went to see her GP who contacted Alice’s breast-cancer doctor at the hospital. When they heard her story she was admitted to hospital as a matter of urgency. There was great concern that the cancer might have spread to Alice’s brain. As soon as she arrived at the hospital she had a brain scan. To everybody’s great relief the first scan was normal. Alice was reassured by that but it did not help her headache, which was every bit as severe. She was scheduled for a second, more sensitive type of scan. Thankfully that too was clear. Next she underwent a lumbar puncture to look at her spinal fluid for more covert signs of cancer spread. No cancer cells were found. The headache got no better. For the next week Alice could barely get out of her hospital bed. Nobody could explain her headache and painkillers were of little use. A decision was made to expedite the rest of Alice’s tests and proceed directly to surgery.
A week later Alice underwent the operation to remove her left breast. Her sister, who could not be held off any longer, was there to watch her being wheeled off to the operating theatre. She was also there when Alice woke up and discovered that for the first time in a week she had no trace of headache. The surgeon came to visit Alice at the end of the day and let her know that the operation had gone very well and Alice could be hopeful of a speedy recovery.
That night, despite her relief that the operation was behind her and delight that she was headache-free, Alice slept fitfully. Sometime around midnight, when the ward was quiet and all the other patients appeared to be asleep, Alice began to experience a pain in her chest. At first it was an annoying discomfort but soon it became an intense burning, worse than any pain she had ever experienced in her life. It hurt to breathe. Soon she felt as if she might suffocate, as if each breath was so shallow that it could not sustain her. When she could bear it no longer she pressed the button to call the nurse. The nurse took one look at the stricken Alice and called one of the doctors. The first thing he did was send Alice for a chest X-ray. It was clear. A heart tracing and blood tests were also entirely normal. Alice was given morphine to stem the pain. That made her drowsy but also made her breathing feel worse than before. Eventually the nurse removed Alice’s bandages to check the wound and found it to be clean and the stitches intact. Nobody could think what else to do and all night the nurse sat by Alice’s bed to ensure that she was safe. In the morning the consultant saw Alice but could not find an explanation for the pain. A further volley of investigations followed. Nothing abnormal was found. In time, despite the lack of explanation, Alice felt a little better and was eventually allowed home.
After two weeks, chemotherapy began. Alice was advised that none of her tests had shown any spread of the cancer but, given her young age, chemotherapy would give her the best chance of a cure. Alice’s sister stayed in London for the first two weeks to give support. In time, however, she had to return to Australia where she had a job and family of her own. Approximately one week after that, Alice began to notice a burning sensation in her arm. It was most obvious when she was in bed and trying to fall asleep. The burning became more and more unpleasant. When she tested her fingers she found them numb despite the pain. Soon she wondered if her hand was also clumsy. Then one day she woke to find her left arm was completely paralysed. Alice woke her father who brought her straight back to the hospital.
The oncologist arranged for Alice to have more scans, first of her brain and, finding that normal once again, then of the nerves in her shoulder. They were also clear. A neurologist was called, who examined Alice and arranged electrical studies to check the integrity of her nerves, to see what was happening to the messages that should be passing between Alice’s brain and her arm, telling her to move. Alice also had a second lumbar puncture. Nothing was amiss on either test. The arm weakness could not be explained.
The following morning Alice was in the X-ray department having yet another scan when she collapsed to the ground and lost consciousness. Stricken staff struggled to cope as she lay on the floor deeply unconscious and convulsing. It was only later that I would meet Alice, and together with her try to make sense of her range of symptoms.
With such an array of possible ways for psychological distress to show itself, I often find myself wondering why this way in this patient and not another? Sometimes I think I know the answer to that question and sometimes I don’t. With Alice, I didn’t know but hoped to find out in time. Mary, on the other hand, never accepted her diagnosis and, while I thought the cause was obvious, she did not.
‘I’m only telling you because if I don’t somebody else will,’ Mary said. ‘My husband is on remand for abusing a child.’
Mary sat throughout our consultation with her eyes tightly closed. That was why she was being seen. Two weeks previously Mary had noticed that she had an irresistible desire to close her eyes. She found herself blinking repeatedly until she was only comfortable when her eyes were fully closed. Gradually she found that she could barely open them at all. For a while she could pry her eyelids apart with her fingers but always with difficulty. Eventually even that became impossible.
‘And do you know what the worst of it is?’ she said. ‘It was his own sister that called the police. Who does that sort of thing to their own family?’
‘Do you think your husband’s situation might be important? Is that why you’re telling me?’ I asked.
‘I’m telling you because I can’t be like this while John’s in prison. There’s nobody but me and him to look after the girls.’
‘How many children do you have?’
‘Two girls. Fourteen and eleven.’
Mary suffered with blepharospasm, a movement disorder which manifests as spasm of the muscles around the eye causing involuntary eye closure. It is a condition for which there is no objective diagnostic test. An electrical study on the affected muscles will show that they are overactive but does not easily distinguish muscle spasm that has a psychogenic or emotional cause from that which is due to a brain disease. In fact, when blepharospasm has an organic cause, tests are often normal, which means that even if you suspect it, it is difficult to make a bold statement that the problem is purely due to stress. However, there may be clues to the diagnosis in how the symptoms behave. For example, when there is an organic cause it is usually possible for the sufferer to open their eyes at least a little. Mary could not open her eyes at all, so even if she had not told me about her life, I would have suspected that her problem was stress-related. I told Mary what I thought and I suggested that she see the psychiatrist. Mary blankly refused. She told me that she did not believe me and, besides, who would look after the children while she was dallying about with a psychiatrist? She needed to be better today, she said. A decision was made to treat her with a muscle relaxant so she was given diazepam. And it worked. She began to get better and in two days she was well enough to go home.
But all that diazepam had done was to mask Mary’s symptoms. The underlying problem had not been addressed. So the little wandering animal was on the move again and Mary was readmitted to hospital only one month later. A neighbour had brought her in. She was found wandering in the street wearing only a nightgown. Mary did not recall ever meeting me before, as she had lost her memory.
The blepharospasm had disappeared and in its place she had a dense amnesia about all the events of her life. She could not remember her name or how many children she had. She could not remember where she grew up or what jobs she had done. She needed to be told what she liked and what she disliked. All her sense of personal identity had been lost.
‘Who is with the children?’ I asked her.
Mary looked blankly and her neighbour answered. ‘They are with mine at home. Her husband got out of prison last week and he’s not allowed to be alone with the girls until the trial is over.’
Mary was confined to hospital once again. Her children visited her and taught her what sort of food she liked. They told her about her life.
‘They seem like nice girls,’ she said after they left.
I tested her memory. I showed Mary pictures and asked her to name what she saw. When I showed her a picture of a horse she told me she could not remember the word but she wondered if it was ‘daffodil’. When I showed her a picture of an apple she said, ‘I know that one. The girls told me that I like those. It’s an apple,’ and she smiled at her triumph. When I asked her about her childhood she could not answer any of my questions.
Next I showed Mary a series of pictures of famous people. I asked her if she knew who they were and then I asked her if she knew if the person in the picture was dead or alive. Mary got every ‘dead or alive’ question wrong. Of course it is almost impossible to get every question wrong like that. Chance alone would see her be correct fifty per cent of the time.
I was forced to tell Mary that her brain scan and EEG were normal, but also the pattern of her memory loss did not fit with any neurological disease. I told her that I suspected stress was contributing to her problem. For the second time Mary rejected my suggestion out of hand. This time after Mary was discharged she did not come back, but she left me with a feeling that I could not shake. My head was filled with thoughts of the things that Mary could not bear to look upon, and the things that Mary could not tolerate to remember.
Psychosomatic illnesses, like their ancestor hysteria, have been likened to a chameleon: every time medicine tries to pin them down they become something different. Hysterical convulsions have long been the quintessential symptom of hysteria. They have waxed and waned in their prominence but have always been, and still are, a well-described manifestation of psychological distress. But they are far from its only manifestation.
Almost any function of the body can be affected in almost any way. One day a woman loses speech entirely and the next day she speaks in the voice of a child. Or a man cannot remember who he is, how to button his shirt or brush his hair. He greets his wife as he would a stranger. A girl feels a lump in her throat and becomes convinced that she cannot swallow. A limb gains a life of its own and begins to wander erratically as if it does not belong to its body. Eyes close involuntarily and no amount of coaxing or prising will open them. A boy repeatedly drops to the ground; every time he stands, he falls. History has seen every one of these things described.
Even within a single individual the possible clinical presentations are protean, sometimes changing slowly over years but other times over days or hours or even minutes. But why does one patient become paralysed and the next suffer stomach pain? Many have tried to answer that question, the most noteworthy of whom were perhaps Sigmund Freud and Josef Breuer.
Freud was another disciple of Charcot and a contemporary of Janet. Charcot would inspire Freud’s interest in hysteria and hypnosis. Janet’s concept of dissociation and the subconscious would lead Freud to his own understanding of the disorder.
Freud qualified as a doctor in 1881 in Austria. Most know him as a psychoanalyst, but his early work was as a zoologist, neuroanatomist and pathologist. Then in late 1885 he moved to Paris for five months to study at the Salpêtrière and this experience would change his future irrevocably. Although his stay in Paris was brief, the effect of what he learned would be lasting. In a letter to his fiancée, Martha, Freud wrote of his experience, ‘Charcot, who is one of the greatest physicians and a man whose common sense borders on genius, is simply wrecking all of my aims and opinions. I sometimes come out of his lectures as from Notre Dame, with an entirely new idea of perfection.’
Freud left Charcot’s tutelage intent on pursuing an understanding of hysteria. He had been particularly inspired by Charcot’s use of hypnosis and his idea that trauma could act as a trigger for hysteria. He quickly developed a close working relationship with fellow Austrian physician Josef Breuer, who shared a similar interest.
Much of what happened next was inspired by Josef Breuer and his long-term patient Bertha Pappenheim.
Bertha had fallen ill in 1880 when she was twenty-one years old. She was an intelligent girl who grew up in a society that was not stimulating for women. She escaped the banality of her existence through a vivid imaginary life. She was also a kind and caring girl and when her father fell ill in 1880 she became his principal carer. It was soon after that her own medical problems developed.
The first symptoms were innocuous: she became weak and stopped eating, but this was easily attributable to lost sleep and long hours spent looking after her father. But soon her symptoms evolved. She became violently disgusted just by the sight of food. At the same time she acquired an insatiable thirst but could not stand to drink a glass of water. Her next affliction began as a simple cough, but one which became chronic and for which no physical explanation could be found. Her illness was soon following a familiar route: bizarre impossible symptoms flitting from one part of the body to another but never explained. Her right arm became contorted and useless. Her legs followed. She suffered double vision and loss of vision. Her speech was affected – at first she had difficulty speaking, but then she became entirely mute. When she did eventually start to speak again she had lost her native tongue of German and only spoke in English.
Over a period of years Breuer had been employing a novel approach in his care of Bertha. The mainstay of the treatment was an exhaustive combination of hypnosis, and talking. He hypnotised her so that she entered a state of suggestibility during which they talked about her symptoms and in so doing traced them back to their source. Together they discovered that if she could identify the moment that a particular symptom arose and then relive it under hypnosis, that symptom would be relieved.
In one example, under hypnosis Bertha suddenly recalled an unpleasant memory from her past that she seemed to associate with her aversion to water. She had a maidservant who she did not like and who had a dog. One day Bertha found the dog drinking from a glass of water. The sight so disgusted her that, from then on, whenever she saw a glass of water a similar disgust arose within her, even though the memory of the original incident had been suppressed. As soon as this memory was uncovered, Bertha’s repulsion for water was cured.
Freud combined the ideas of Charcot, Janet and Breuer. He surmised that trauma, particularly if it occurred when a person was in a hypnoid, daydreaming state, could lead to the repression of feelings and memories. This was at the core of his idea of how hysterical symptoms were generated, and it was a psychological rather than an organic process. He agreed with Janet that there was a splitting of consciousness, a dissociation, but in his opinion the unwanted thought had been forcibly consigned to the unconscious so the patient became entirely unaware of its existence. It was a more dynamic process than the person having passively forgotten. He thought that hysterics had in fact actively rejected the unwanted memory. Then Freud began to apply Breuer’s method of conversation under hypnosis in the treatment of his own patients. He surmised that psychological trauma could lead to psychical excitation, and that that very excitation, with no other outlet, could then be converted to a physical complaint. Hysteria had become a conversion disorder.
In 1895 Freud’s and Breuer’s experience with this new form of treatment was published in their shared text, Studies in Hysteria. The book contained five case histories of which Bertha’s was the first, published under the name Anna O. It was she who suggested that the treatment should be named the ‘talking cure’.
In Studies Freud and Breuer suggested several mechanisms for the manner in which a specific symptom might take hold of a particular person at a particular time. Amongst their speculative theories was the idea of symbolism. For example, if a woman were to experience an insult as if it were a slap in the face, and the negative emotion was not appropriately purged, that might lead to the symptom of severe facial pain. In the same way a woman who swallows unkind words, or a truth that she is not permitted to say, might find herself unable to speak. Alternatively she might be afflicted with the feeling of something stuck in her throat. Symbolic hysterical symptoms thus bore a direct, but subconscious, relationship to the insult that had caused them.
Sometimes the symptom was not a symbol but rather was linked in some way to a painful memory. So, if a person was eating at the moment that some sadness or trauma struck, food might become associated with negative feelings. The mere sight of food might thus trigger psychosomatic nausea and vomiting or an inability to eat.
What was important in Breuer’s and Freud’s theory was that the triggering incident or insult had usually been entirely forgotten, having been replaced by the physical symptoms. In Studies in Hysteria Breuer wrote ‘hysterics suffered for the most part from reminiscences’. To Freud and Breuer hysteria was an unbearable memory or feeling made palatable by its conversion to a somatic complaint. To treat the patient it was necessary to uncover the lost memories. To do this they experimented with hypnosis. They followed their patient’s illnesses back to their source and found that once the trigger for the symptoms had re-entered the realm of conscious recollection, catharsis could be found. It was a painstakingly slow process, events were followed chronologically backwards and any missed trauma would mean that the cure would only be transient.
More than one hundred years have passed since Studies in Hysteria was written. Those years have seen much criticism of Freudian theory. Freud would abandon both hypnotism and his seduction theory, to be replaced with free association and the Oedipal theory. Freud and Breuer would eventually distance themselves from each other and from some of the ideas put forward in Studies. Over time many of the hysteria patients that Freud and Breuer had declared successfully treated would prove to relapse. Bertha Pappenheim’s symptoms had resolved at the end of Breuer’s account of her treatment in Studies, but she later relapsed and spent many years institutionalised. Eventually Freud would abandon hysteria altogether and turn his attention to neurosis.
However, for all the shortcomings in the concepts proposed by Freud and Breuer in Studies, the twenty-first century has brought no great advances to a better understanding of the mechanism for this disorder. The terms dissociation and conversion are still widely in use, sometimes interchangeably, sometimes as more of a nod in the direction of the history of these disorders than a real intent to identify a mechanism.
The latest version of the DSM uses the term dissociation to describe psychological symptoms in which there is an unaccounted loss of contact with surroundings. This might manifest as a sense of ‘derealisation’, a feeling of unreality, or as a loss of a feeling of personal identity. This manifestation of a dissociative disorder is usually seen by a psychiatrist. To the neurologist, dissociation may present as dizziness, forgetfulness, memory loss or loss of consciousness. The concept is still considered to be a potential mechanism in the development of psychogenic convulsions, which is why they are often referred to as dissociative seizures. Many neurologists and psychiatrists regard dissociation as specifically implying a history of sexual abuse, although this view is inaccurate. The DSM does agree that dissociation is usually triggered by some form of trauma, so the overall use of the term is not greatly different to Janet’s or Freud’s. But there are some differences. Janet considered dissociation to occur as a split in the consciousness of the weak-minded. Freud thought that unpleasant memories were consigned forcibly for ever into the unconscious. We no longer subscribe entirely to those ideas, but the general principles of modern dissociation are not very different to those of Victorian times.
The term conversion disorder, a label drawn from Freud’s concept of distress converted to physical symptoms, remains the standard term for the neurological form of psychosomatic disorders. When used now it is not always the case that the doctor who uses it either believes in, or even knows of, Freud’s ideas. More likely it is a convenient label, that is not overly pejorative and whose implication of a non-organic disorder is widely understood by the medical community.
So, in day-to-day practice Janet’s and Freud’s theories are regularly used, or misused. I employ them when I am trying to understand the complex problems that I encounter and am trying to make sense of this disorder for my patients. Because my own hands shake when I am nervous I can see a certain logic in the sense that an emotion has been converted into a physical symptom.
This is not to say that there have been no changes in thinking. Consciousness is no longer considered to be a single amorphous thing, but instead it is made up of many domains including attention, perception and memory, amongst others. Consciousness is the mechanism by which we choose our mental experience; it is not a limitless resource so it must be selective. Attention is the component of our consciousness that distributes our awareness; it makes the selection for us. Once something has entered our domain of awareness, our perception is the means by which we appreciate it. Perception is subjective, dependent on our personal and cultural experiences. Memory can be divided into explicit memory (things we can consciously recall), and implicit memory (those things that are outside of our conscious awareness). Implicit memory allows us to ride a bike even when we haven’t done so for several years. It is also the place where our emotional responses may be conditioned by past experiences even without there being any conscious recollection of those experiences – it is our subconscious memory, in other words. Modern technology can now take these abstract ideas and make them more concrete. Techniques like functional MRI can tell us which parts of the brain mediate different aspects of consciousness. There is much still to be understood but we at least know that parts of the frontal lobe are involved in maintaining attention, the medial temporal lobe is integral to supporting memory, and the brainstem is important to maintaining conscious awareness.
Functional MRI has also been used to show that people can indeed have emotions of which we are only aware at a subliminal level. Subjects in an MRI scanner are shown pictures of unpleasant images. The pictures are shown at a rate slow enough to be perceived by the patient but too fast for them to register what they have seen into their conscious awareness. Test subjects report no change in how they feel during the test but changes in heart rate indicate an emotional change of which the test subject is unaware. At the same time that these changes are detected, functional MRI images demonstrate a change in activity in the area of the brain called the amygdala. The study concludes that feelings may be generated outside of conscious awareness and that that is mediated by the amygdala.
So we are now able to produce pictures of the brain that reflect just a little of the secrets we keep from ourselves, but even with these advances we still struggle to understand how symptoms as dramatic as coma or loss of consciousness can be generated from an apparently healthy brain. There are some aspects of how our bodies respond physically to stress that are understood, however. The impact of stress on the mind is hard to objectively measure but its impact on the nervous system outside the brain is not.
Integral to how our body responds to stress is the autonomic nervous system. The peripheral nervous system connects our brain and spinal cord to the limbs and organs. It can be subdivided into different sorts of nerves. We have motor nerves that allow us to move – when we want to lift an arm they transmit the instruction from the brain to the muscles and make it happen. Sensory nerves carry the signal that allows us to appreciate sensations, both pleasant and unpleasant. But there is an entirely separate system of nerves that controls the functions of our body that are not voluntary, and it is these nerves in particular that reflect our emotional state. The autonomic nervous system is in command of our internal organs, it alters the movement of our bowels, empties our bladders, regulates our sweat glands, changes the size of our pupils, constricts and dilates blood vessels, slows and speeds the heart. In turn, the autonomic nervous system can be subdivided. The sympathetic nerves determine how we will react when faced with threat. They prepare us for fight or flight. Their name is drawn from Galen’s concept of sympathy; these nerves allow one organ of the body to cooperate with another. When we are frightened they cause our heart to race, our palms to become sweaty, our mouth to become dry. The parasympathetic nerves do the opposite. They exert unconscious control over our organs when we are relaxed.
The autonomic nervous system helps maintain our blood pressure and heart rate but, like every other function of our body, it doesn’t always work just as it should. In the face of sudden stress the sympathetic nerves act quickly, but transiently, until the threat passes. This serves a purpose in an urgent situation. But when we are under chronic stress, the sympathetic nervous system might be activated for prolonged periods at a low level. Our bodies do not adapt well to chronic stress and this is when the autonomic nervous system is capable of harm, causing high blood pressure or palpitations of the heart. For Pauline, such chronic stress might have caused her bladder to stop emptying and provoked stomach pain through the increased movement of the muscles of the bowel. In a strange way Galen’s theory was right – Pauline’s body was simply reacting in sympathy to the distress that she was in.
Another quantifiable way in which the body responds to stress is through the action of the hypothalamic-pituitary-adrenal (HPA) axis. The HPA axis integrates the neurological and endocrine systems. The hypothalamus in the brain can secrete hormones, some of which bind to the pituitary gland. In response the pituitary gland releases the hormone ACTH which in turn leads to the production of cortisol by the adrenal glands. Cortisol plays an important role in the metabolic, cardiovascular, immune and behavioural responses to stress. Also, importantly, cortisol regulates the magnitude of the response of the HPA axis. Rising levels of cortisol will act on both the hypothalamus and pituitary gland to reduce further ACTH and cortisol release. This negative feedback loop is important in order to prevent an overactive response of the various body systems to stress. Both the failure of an adequate response of the HPA axis in the face of stress, and the failure of the negative feedback loop when stress is chronic, have been implicated in psychosomatic illness.
But while the autonomic nervous system and HPA axis can account for some psychosomatic symptoms, they cannot account for others. Dysfunction of the sympathetic nerves alone cannot explain psychogenic paralysis of the limbs. Voluntary movement begins in the motor cortex of the brain and spreads through the motor pathways to the motor nerves. These nerves communicate directly with the striated muscles of the limbs, resulting in movement. The autonomic nervous system exerts control over the smooth muscle of the bowel and blood vessels but has no role to play in movement of the arms and legs. Nor can sympathetic nerves produce psychogenic seizures. Autonomic nerves can lower blood pressure causing a faint, but there is no mechanism by which they could cause a convulsion accompanied by a normal blood pressure and a normal brainwave pattern.
So while heart palpitations and changes in bowel motility (intestinal contractions) might have a biological explanation, the majority of conversion disorders still do not. In the early twentieth century most attempts to find an answer focused on emotional distress and the subconscious, but more recently doctors have started to think about the illness differently. Some wonder if the mechanism might not necessarily be located in the subconscious, nor be the result of stress or trauma, but may instead be an illness of behaviour or a social illness. Freud’s and Janet’s theories require a psychosocial conflict to be present to make the diagnosis, but many patients will deny a specific stressor. In the 1970s Issy Pilowsky, professor of psychiatry at the University of Adelaide, emphasised the importance of the sick role or illness behaviour in development of psychosomatic illness. The concept of an illness behaviour disorder does not require a specific event to trigger psychosomatic symptoms, but instead depends on the varying ways that different people evaluate and act on symptoms that they experience. Some people medicalise every physical sensation and that in itself can lead to illness. Linked to this idea is the concept of a social illness, in other words illness as a rationalisation for psychosocial problems or as a coping mechanism. Most people prefer to feel well, but for some, being unwell provides escape or an explanation for failure. Some may say that is not a new idea either.
A related theory is that some psychosomatic disorders are illnesses of perception. People’s perceptions of the severity and persistence of their own symptoms can be very inaccurate. Pain and fatigue cannot be measured so we must take their descriptions at face value. However, some symptoms can be quantified and when that is done and the patient’s account is compared to the measurements taken, the results can be very surprising. Tremor is a common psychosomatic symptom. Sometimes it is so severe that it can be very disabling. Movement-disorder neurologists use a device called an actigraphic watch to quantify tremor. The patient wears the watch and it records the movement in the arm around the clock, and when the doctor reviews the recording it allows them to assess the persistence of the tremor throughout the day. Simultaneously the patient uses a diary to record when they think tremor is present. It is not unusual for the patient to report almost continuous tremor and yet when the recording is reviewed the tremor has only been present for a fraction of the day. The patient wasn’t lying, but their worry about and vigilance of their own symptoms results in the belief that the tremor is more persistent than it is. These sorts of observations raise the possibility that it is not the symptoms themselves but how we think about them that is at the heart of the disability they cause.
The greatest modern advance in thinking about psychosomatic illness has probably been the move away from brain–mind dualism. We are less inclined to think of the brain and mind as separate. It is not the case that the brain is healthy and the mind is sick but instead that the two are interdependent on one another. People with brain diseases like epilepsy and multiple sclerosis often suffer from problems like depression. People with mental illnesses like schizophrenia have been shown to have irregularities on structural brain imaging. Psychosomatic illness may well be an illness of the mind, but there must be something happening physiologically in the brain to produce the disability.
To this end much modern research focuses on an attempt to understand the neurobiology of these conditions. Stress may or may not act as a trigger, but what exactly is happening at a pathological level in the brain at the time of the symptoms? That is what patients really want to know. Functional MRI is also in use in this area of research. Several studies have looked at functional MRI in patients with a variety of psychogenic disabilities including paralysis, sensory loss and dystonia. As we’ve already seen, biological changes can be observed in the brain in patients affected by these conditions. People with sensory loss have been shown to have reduced activation in the sensory parts of the brain. People with motor weakness have been shown to have increased connectivity between the amygdala, a brain area important in motivating attention, and the supplementary motor area of the frontal lobe, a region that helps control movement. Several studies show increased activation in the right prefrontal cortex in patients with psychogenic conditions.
The problem arises when we ask what these changes on functional imaging actually mean. They could be interpreted to imply that people with conversion disorders have faulty wiring in the brain in the first instance. Alternatively the findings could be a manifestation of neuroplasticity – a change or reinforcement in neural pathways secondary to a psychological trauma or even stress – a marker for the illness rather than a cause. Or MRI findings may just be evidence for the increased effort required for affected patients to make any movement – not a sign that there is something wrong in the brain but a sign of the concerted attempt to move.
There is no doubt that functional MRI studies have given us interesting information. They put us on the road to the idea that psychosomatic disorders are not all in the mind. And yet, the functional MRI studies are far from providing us with a full explanation. All the studies have involved small numbers of patients, and results between studies are variable and not always reproducible. Similar functional MRI findings have also been seen in patients with organic dystonia and epilepsy, so they are not exclusive to patients with psychosomatic disorders. Also the way that the results are interpreted is only speculative – scientists are trying to extrapolate from shadows on a scan to an understanding of the complex workings of the brain. While the functional MRI findings tell us that the brains of people with psychosomatic problems are behaving differently to control subjects, that does not necessarily imply a brain disease but does support the view that the symptoms are not imagined.
So we have new ways of thinking about and looking at the brain and the mind. Psychosomatic symptoms are far less likely to be considered symbolic than they were in the past and less likely to be considered ‘all in the mind’. But still it often feels to me, and to my patients, that we are as far away from answering any of the mysteries that surround hysteria as we were when Charcot, Freud and Janet were alive. And that was a very long time ago.
Alice’s symptoms did not rely on symbolism. Her experience of having cancer was moulded by her knowledge of disease and by all the experiences that she had had in her life. Alice was the youngest of four children. She had two brothers and one sister. When Alice was only twelve she had watched her mother die of cancer.
Alice’s mother was forty-six when she discovered a breast lump. Her story began much like Alice’s but it had escalated more quickly. Even before the lump had been removed scans suggested that she had enlarged lymph nodes, meaning that the cancer was not confined to her breast. It was suggested that she should have chemotherapy to shrink the cancer in advance of any operation to remove it. Once the chemotherapy was due to start it was impossible for her to shield Alice from what was happening. Quickly Alice saw her mother, who had been so full of life, wither before her. Every day when Alice came home from school she feared what she might find. Her parents wanted to send her to stay with her grandparents until the chemotherapy was finished but Alice would not be parted from her mother. She was old enough to know that chemotherapy did not always work.
Once the chemotherapy had shrunk the tumour Alice’s mother underwent surgery to remove her breast and any affected lymph nodes. Next she had extensive radiotherapy in an attempt to kill any remaining cancer cells. After that Alice and her family had a very brief reprieve. Small bristles of new hair appeared on Alice’s mother’s head and with it Alice felt she might be getting her mother back. Their happiness was short-lived. One day Alice’s mother began to complain of severe pains shooting down her arm. Her arm became gradually weaker until it hung down by her side. The less she used it the more swollen it became. The doctors told her that the muscles in her arm had become weakened by the damage that the radiotherapy had done to the nerves in her shoulder. At least it was not the cancer coming back, the family had sighed in relief.
Over the course of the next month Alice’s mother appeared to gain weight and recover some of the energy she had lost through the treatment. But before long she began to complain of stomach pain and vomiting and the weight she had gained fell away again. The cancer had spread to her liver. Doctors said there was nothing more that could be done.
Alice and her family cared for her mother in their own home for as long as they could. Then one day the back pain began. She was taken to hospital once again where it was discovered that the cancer was now in her bones. The oncologists said that she would not last long. They could give her steroids to reduce any swelling and allow her home to die with her family. She died before any of this could be achieved. Alice’s mother had lived that one painful year before her death and Alice was at her bedside when she died.
Watching her mother’s illness had a profound effect on Alice. There was much that was terrible about the experience but not every memory was bad. As awful as that year had been, there was time at least for Alice to be with her mother. It was the sort of intense time that only occurs when you know that you are going to lose someone and you need to make the time you still have count.
Alice had seen how the doctors and nurses at the hospital had cared so expertly for her mother and she found inspiration there too. Before her mother died Alice told her that she wanted to be a doctor when she left school. Six years later Alice entered medical school as she had said she would, and five years after that she qualified. She was glad her mother knew something of her daughter’s future before she died. She would not know, however, that in her first year of work Alice herself would be struck down by cancer.
Alice told me that when she discovered that she had cancer she could barely stand to tell her family. It took almost twenty-four hours for her to ring her father. She could not tell him in person, knowing the terrible memories she would see in his eyes. As soon as her family did know they rallied around her, as she knew they would. They insisted that she move home. They would no longer let her go to appointments alone. But with every bit of comfort they offered she also saw them reliving her mother’s death through her.
‘I think I would have preferred not to tell them, to go through it on my own, but it’s not something you can hide.’
Throughout her illness Alice’s father insisted on being with her at every hospital appointment. He felt that Alice should not receive any bad news when she was alone. Alice loved her father. He had raised her after her mother died. Many of her most vivid childhood memories involved the care that he had given her. She wanted him by her side, and yet quickly she discovered that having him there stayed her questions. How could she force this widower to relive the illness that took away his wife? How could she ask blunt questions and have him hear the answers? After a while she begged him to let her go to the hospital alone. He reluctantly agreed although he still insisted that he collect her after each appointment. She knew he worried that one day he would be waiting outside the hospital entrance and she would not appear.
Alice told me about the night after her operation.
‘I was uncomfortable. I couldn’t sleep. It wasn’t the pain. It was the whole experience. Because of the bandages I was having to try and sleep on my back, which I never normally do. It was the narrow unfamiliar bed and a cold unfriendly room. In the evening my family had visited and my sister had stayed with me and everything had felt alright. Once it got late I told my sister to go home. I’m a grown-up and I’m a doctor and I’ll be fine, I told her. But in the middle of the night it was dark and in the darkness I stopped being a grown-up and a doctor and, when I did, the demons came to visit. I’m a doctor, I know about all the possible complications of surgery, the wound could get infected or could fail to heal and get broken down. About an hour after lights out my mind ran to all the possibilities. Soon I felt the first pain. Suddenly I got a feeling as if bugs were crawling around inside my chest. I had a vivid picture in my head of the infection. With every passing hour things became worse. I knew I was being ridiculous but that didn’t stop it. By the early hours of the morning I thought I could feel the wound in my chest tearing if I took a deep breath. I was convinced of it. I tried to peep down the bandage and, when I did, I thought I could see something black that shouldn’t have been there. In my mind it was gangrene. And I knew that it didn’t make sense. But common sense means nothing at four o’clock in the morning when you are alone. The more I imagined it the worse the pain got. In the end I had to call the nurse. I told her about the pain and when she called the doctor and he started doing tests it just got worse instead of better. I think the tests made my imaginary pain real. I have wondered since if all that was really needed was for one of them to simply say, “There, there, everything will be alright.”’
‘Like a mother might.’
‘Yes, I suppose so.’
‘It’s hard not to relate what happened to your arm to what happened to your mother.’
‘I knew there was nothing wrong with my arm. It’s hard to explain. I knew, but the weakness and pain felt so real that I couldn’t always hold that conviction. I hadn’t had radiotherapy. I hadn’t had the lymph nodes removed from under my arm. I knew I had no reason to develop the complication my mother had developed but that gave me no consolation at the time.’
‘And when the tests were normal?’
‘My arm immediately got better and I just felt stupid that I had let them do the tests in the first place.’
‘You should try not to be a doctor here. Let yourself be a patient. Let your doctors care for you as a patient not as a doctor.’
Alice liked the breast surgeon and oncologist and all the nurses and doctors on the team who were responsible for her care. She might have imagined it, she said, but she sometimes thought that they gave her extra time in acknowledgement that she was a colleague of sorts. But she also felt that they did not know quite how to communicate with her. Should they talk to her as they would any other patient, or as a doctor would talk to another doctor? People were considerate, technical terms were used so that Alice would not feel patronised. There was honesty. When Alice asked if normal screening tests were reliable in ruling out cancer spread the doctor had replied, ‘Cancer cells can seed in the brain or elsewhere in the body, so, I’m sorry, but no, a normal scan does not provide an absolute guarantee.’
In Studies Freud told the story of Fräulein Elizabeth. Amongst her many disabilities she suffered a continuous pain in her leg that had, for a long time, gone unexplained. Through extensive exploration of her psyche, Freud eventually discovered that the pain originated at exactly the point in her leg where Elizabeth had once cradled the leg and foot of her dying father. In the moment of horror at her father’s death it was into that pressure point that all her distress had flowed. When the consultant told Alice that cancer cells could seed in the brain, for a moment, Alice became Fräulein Elizabeth – and her doctor’s hand was resting firmly on her head.
‘The stupidest thing happened one day that I never told anybody about. It was a miserable grey rainy day and I had been walking around the city centre looking in the shop windows. As the day ran on I began to notice a numb feeling in my right foot. Every now and then I’d stop and shake my foot and try to get the feeling back but it wasn’t working. Over an hour or so it became so bad that my foot felt painful and I could barely feel the ground underfoot. I really started to worry. In my head the cancer had invaded my spine and eroded the nerves going to my foot. I began to notice a pain in my back which had never been there before. I decided that I had better go home and in the half-hour that the journey took I had almost written my last will and testament in my head. When I got home I sat on the sofa and took off my shoe so that I could massage my foot. When I did I discovered that my sock was drenched through and ice cold. I looked at the bottom of my shoe and a hole had worn through the sole and was letting the rainwater in. There was nothing wrong with my foot. My anxiety about the cancer had become so heightened that all good judgement was lost, I could no longer tell the difference between the spread of cancer and a hole in my shoe.’
Symbolism attributes a deep meaning to symptoms but, in my experience, psychosomatic disorders rarely follow that pattern. Occasionally, as in the case of Mary, I can fashion some symbolic attribution to explain a specific disability. I always believed that Mary simply could not face up to, or bear to think of, what her husband had done. In my experience, however, the physical manifestations of stress are much more likely to be influenced by the sufferer’s past experience of illness, what they know about the body and what lessons their life has taught them. Some factors that shape illness come from our personal lives and others come from the society in which we live.
The term run amok is mostly used to describe a sort of chaotic behaviour that is usually frenzied but benign. It might describe a group of children let loose at a party. But the word amok refers to a set of symptoms and behaviours attributed to illness and seen particularly in the Malay culture. A man struck down by amok flies into a rage that is unprovoked and out of character. In a typical attack he is launched on a violent killing spree often directed against strangers and taking place in crowded open spaces. Very often the victim of amok dies either at his own hand or at that of another. In the Malay culture this behaviour is viewed as an illness with the cause attributed to possession by an evil tiger spirit. This belief removes all blame from the sufferer. The sufferer becomes victim and his suffering takes on a cultural acceptability that would not be offered to a person who was violently depressed or who committed suicide in a more traditional way.
The DSM considers amok to be a psychiatric diagnosis belonging to a group of conditions referred to as the culture-bound syndromes. They are disorders that are familiar to and common within specific cultures and unusual outside those cultures. Other culture-bound syndromes are more easy to see as medical. Koro is a condition almost exclusively seen in Asian men. It is a disorder in which a man becomes convinced that his penis is shrinking. He might come to the hospital with his penis held firmly in his hand to prevent further retraction into the body. In another example, the jumping Frenchmen of Maine were a group of lumberjacks who lived in an isolated community and who were struck down by a condition manifesting as an excessive startle reaction in response to noise or fright. Grisi siknis is an affliction seen in the Miskito tribe of Central America. It manifests in women as nausea, dizziness and bouts of frenzy leading to loss of consciousness. Society, culture and superstition plant ideas that mould our concerns about our bodies and that help to determine what counts as an acceptable public manifestation of distress.
The media is also important in determining the sorts of symptoms that people will develop. In the 1990s I saw many patients who were convinced that their miscellaneous physical symptoms were due to candidiasis. Popular magazines and newspapers were publicising a candida epidemic at the time. One website described the symptoms of candidiasis as a feeling of being run-down, irritability accompanied by bloating, itchy ears, poor concentration and a craving for sugar. The media had described the symptoms in detail and people came to the hospital with just those symptoms, and a conviction about their own diagnosis. Candida is a fungus that can cause simple medical problems like thrush or serious life-threatening illness in those with immune dysfunction, but in the candidiasis sufferers I am describing here no infection could be found. Patients rarely ask me about candida any longer. In the twenty-first century the exact same symptoms are more likely to be attributed to gluten sensitivity or allergies. I recently went to a dinner party where every person bar two, at a table of ten, reported that they had an intolerance of or allergy to at least one foodstuff. Most had developed the allergy in middle age which is not really how an allergy typically behaves. People look for explanations for changes in their bodies, something to account for every unpleasant feeling. There is an unwillingness to accept behavioural or emotional factors, or the effects of ageing, as an explanation. Society and the media are often available to provide a more agreeable answer and to add to the symptom pool available. People are suggestible. If you ask somebody if they have itchy ears as if it is diagnostic of something important, people will search for that symptom in the reaches of their memory and a surprising number will find it there.
Personal life experience is also a great moulder of psychosomatic illness. A girl faints in a circumstance suited for a faint. A month later she develops convulsions. Her body, inspired by a normal physiological response to heat or stress, has learned a new way to behave. Many people with dissociative seizures have experienced seizures or collapse in some form before. Either they have fainted or they have suffered seizures in childhood. People who work with epilepsy sufferers or who have a family member with epilepsy have a higher risk of developing dissociative seizures. Someone who has a friend who has suffered a brain tumour might find themselves developing headaches. Someone who has worked with motor neurone disease sufferers begins to notice muscle cramps. There are many anecdotal reports of medical and nursing students developing the symptoms of the disease they are treating.
If psychosomatic symptoms arise in the subconscious, their manifestation will depend on what else lives there. Our subconscious is filled with our memories, and that is what we draw on. The health service does not provide an exhaustive psychoanalytical programme for the sufferers of conversion disorders so it is rarely possible to follow every symptom to its source as Freud might have advocated. Often we must be satisfied with making a sound diagnosis and giving the patients what support we can and accepting that not every question has an answer.
I do not exhaust myself with trying to solve every time the puzzle of why this symptom in this patient; my time is taken up with the fickle nature of the symptoms and knowing how difficult they will be to explain. Being aware of that mutating quality, how something new steps in to replace the problem that is just departing, forces me to stay alert.
‘Please do NOT start any new medications or arrange any tests or procedures without speaking to me first.’
About six months into my first consultant job this is the instruction I began to leave on the front cover of all my patient notes. I wrote it in red ink, capitalised and underlined – I had learned a trick or two from my patients about how to be heard. But still I was holding back, what I really wanted to write was ‘No wheelchairs, no crutches, no morphine, no appendicectomy, no surgical procedures of any sort.’ As usual this is something I had learned the hard way.
There are many examples but Lorna is memorable for the night of lost sleep she caused me. A junior doctor telephoned me at home to let me know that Lorna had been taken to theatre to have an exploratory operation and had started convulsing in the anaesthetic room and nobody knew what to do. That afternoon I had left Lorna sitting quietly in her monitoring room and now, from nowhere, somebody was preparing to cut her open.
Lorna had the recognisable history of multiple unexplained medical complaints that by now should be familiar: chronic headache and joint pain, recurrent burning pain passing urine, episodic difficulty swallowing. She had come to me with seizures and I did not doubt the diagnosis of dissociative seizures but, as usual, that was just my opinion until I had found proof. I had seen Lorna less than eight hours before and she had not mentioned any hint of stomach pain. But now I learned that close to midnight a junior doctor had been called because Lorna was suddenly doubled over with pain in her abdomen. That junior doctor had not met Lorna before. Seeing how distressed she was he called a member of the surgical team who examined her and took some blood tests. Lorna’s temperature was said to be slightly high and her blood tests showed a minor irregularity, not an unequivocal abnormality but a result on the borderline of normal. Lorna was writhing in distress and was given morphine, and a decision was taken that there was enough evidence that she might have appendicitis. She was disconnected from the monitoring equipment and was taken to the anaesthetic room to be prepared for the operating theatre. I think it is highly unlikely that anybody gave her notes any more than a cursory look during the time it took to reach the decision to operate.
When I took the phone call I imagined Lorna showing her pain in every way possible. The night-time peace of the ward was probably broken apart by it. Other patients would get upset. What was wrong with that poor girl? Why was nobody helping her? Nurses and junior doctors would soon begin to feel out of their depth. Nothing they said or did would seem to be helping and an air of panic would begin to set in. There would be inevitable widespread relief when it was decided to anaesthetise Lorna and take her to surgery.
The morphine she had been given did not put her asleep fully but sedated her sufficiently that she could be prepared for theatre and wheeled to the anaesthetic room. When she arrived there the anaesthetist was told only that Lorna was being investigated for blackouts and was on no medication. He was entirely unprepared therefore when Lorna’s whole body abruptly stiffened, her limbs began to thrash wildly, her pelvis thrust forward and her head started to hit itself repeatedly against the cot sides of the bed. He wanted to give her sedation but she had pulled her intravenous catheter out of her arm and she was now flailing so wildly that nobody could resite it. Which is when I was called.
I got straight into the car and went to the hospital. When I arrived at the operating theatres it didn’t take long to find the correct room. I could hear the shouting from the end of the corridor. By now Lorna was lying on the floor. One doctor was holding down her legs while another and a nurse had taken an arm each. There were two pillows under her head to protect it as it hit against the floor. Under the grasp of her captors Lorna was straining and fighting against three adults who were barely a match for her.
The anaesthetist was standing to the side and he was furious. ‘Why has this girl not received treatment for her seizures?’ he shouted at me when I walked in the door.
I suppressed the words that were perilously close to the tip of my tongue and instead I turned to the other people in the room and asked them to stand away from Lorna.
‘But every time I let go she keeps kicking the wall,’ a very young-looking doctor said, and I thought he seemed as if he was just about to cry.
I guaranteed him that letting go was the right thing to do and I asked everybody except the nurse to leave the room. And, of course, as soon as they let go Lorna’s thrashing became even wilder than before. The young doctor looked at me worriedly, half bending towards Lorna again, expecting that now I had seen he was right I would tell him to return to holding her legs still. Instead I told him that we needed to remove the pandemonium from the room and that it would be more helpful if everybody gave Lorna the space she needed.
When Lorna and the nurse and I were alone there was a thirty-second period when I crossed my fingers and hoped that I was right. During that time Lorna’s body had travelled across the floor and her legs were now beating roughly against a trolley. The nurse and I moved the trolley and throughout I spoke to Lorna, letting her know that everything was fine and that this would all be over in a moment. And then it stopped, as abruptly as it had started, and Lorna was lying with her eyes closed, taking deep gasping breaths. The nurse and I looked at each other. We were both very relieved. Five minutes later Lorna was sitting in a wheelchair, upset, not recalling anything that had happened, but able to communicate normally.
I left her with the nurse and went to speak to the other doctors, thinking that the crisis was over and I could return to my bed. I was disappointed therefore to meet a still-angry anaesthetist and junior surgeon who asked me if they could now put Lorna to sleep and take her to surgery as they had originally planned. Have you learned nothing, I wanted to say, but instead I managed to make a less inflammatory comment and suggested that we wait before planning anything invasive because Lorna had a history of somatising disorders and it was likely the abdominal pain would disappear spontaneously, just as the seizure had.
The junior surgeon was not happy with this and rang his consultant, who was at home.
‘This girl has a high temperature, a high white-cell count and severe abdominal pain,’ the consultant told me over the phone, ‘she needs to go to surgery.’
‘Lorna has a borderline high temperature and a borderline increase in her white-cell count, either of which could be normal on retesting and either of which could be caused by the stress of her seizures,’ I countered.
After a period of stalemate we agreed to repeat her blood tests and wait for the results and to use that time to see if things would progress or improve. She could be taken to theatre if there was any deterioration in the meantime. By the next morning the abdominal pain had disappeared completely without treatment and no surgery had been necessary. When I went to see Lorna she was not happy to see me, but I was happy to see her. She was no better than when she had been admitted to hospital, but at least she was no worse. That was the best outcome I could have hoped for on that day.
I have seen a lot of Lornas, none of whom have ever undergone unnecessary surgery, but many have found new ways of expressing their distress when a first method has proven inadequate. I have told two patients that they have psychogenic seizures and have come back to the ward a day later to find them sporting crutches. Both patients’ seizures went into full remission but neither could walk unaided for several weeks. I have seen many people give up one diagnosis and immediately replace it, and I am forced to realise that nothing has been learned. They come to clinic with knee braces and tales of exploratory operations, new medical problems emerging just as the dissociative seizures melt away.
When relationships break down some get angry, some deny and some quickly try to replace what they have lost. Losing a grasp on the physical illness you thought you had can be every bit as devastating as any other sort of loss and, for some, a quick substitute is necessary. It is a little bit like an addiction. In giving up an addiction some addicts find that they replace one crutch with another, but hopefully one that is less harmful – replacing cigarettes with food, or drugs with cigarettes, for example. When illness behaves as a crutch it too is difficult to relinquish and something is required to take its place. That substitute may be something positive, but that is not always the case.